8 Tips to Help You on Your Chronic Illness Journey

I’ve seen the question, “Well, what can chronically ill people do to make their lives, their friendships, their appointments and their happiness better? Surely there are things they can do, too?!”

Yes. Absolutely! No one is perfect, and having your body and health tossed into the world of chronic illness and pain is never graceful, never easy and never without things that the person could have handled better.

There is no handbook on how to be a good, thriving, severely ill person.

Sadly.

So, mistakes are made. Improvements can be made. Lessons are learned. And no two situations are the same.

However, here are a few things that I’ve been working on, myself. It’s a constant work in progress. I’ve been sick my entire life, and that doesn’t mean I’m an expert at this. People who are newly chronically ill will struggle. Bottom line. Because it is never easy.

1. Make a conscious effort to retain the essence of who you are. This includes your sense of humor, your interests, passions, and your relationships. It will take more work. There will be days where your body will not allow you any extra mental or physical stamina to be the person you are at your core. But don’t let that become the new you. You are so much more than illness and pain. Adjustments will have to be done. Compromises will have to be made. You will have to work at it. Imagine working to remain interested in the things that make your soul sing. It won’t always be easy. But, in my opinion, it is essential to maintaining happiness and maintaining relationships.

2. Find a support system. People who will let you vent when you are upset and scared, but will also help you remember the things you love about life. Who will help you laugh. A support system where you can be all of you who are is very important, because you are changing. Chronic illness will change who you are. It doesn’t take away the essence of who you were, but it adds new dimensions and alters the old ones.

3. Don’t play the “who is sicker than who” game. It doesn’t matter. Sick is sick. It always sucks. We all need support when sick. It’s never easy. And there is no way to compare something like this. It’s unfair to you and to others you compare to.

4. Learn who to not talk to about the serious stuff. There will be people in your life who are not supportive. They will drain you. When you go to them for help, and they hurt you instead, take heed of that.

You matter! Having someone tear you down when you need them the most, and then expecting them to be there for you the next time, is essentially knowingly putting yourself and your health through additional stress. Some people simply don’t have it in them to be who you need them to be. You can’t force it. You deserve to share your soul with people who will be kind to it.

5. Make a point to see the positives around you, as well as the negatives. It’s normal to have moments of self-pity and despair, but it will not only harm your relationships, it will harm you and your quality of life – if you let it become the entirety of who you are.

6. Ask for what you need. People aren’t mind readers. If you need physical or mental support, please ask for it. Be specific. Choose someone you know you can trust if it’s something personal, but definitely make your needs known. Don’t be ashamed of them. We all have things that we need adapted around for us.

7. Allow love and joy to be a stronger force in your life than fear and bitterness. If you are struggling with this, it’s perfectly normal, but a therapist can really help you work through these feelings so that you benefit in the end. How can you help your body if you are unhappy and bitter?

8. Be involved with your medical decisions. Ask your doctor questions. Speak up about your concerns. Become an active member in your health management.

These are just some things that I personally have found to be important to enriching my life. If you have others, I’d love to hear them! Sending my love to all who are dealing with chronic illness and pain. It’s not an easy journey. Together we can help each other.

Lisa Prins is a binge hobbiest who is constantly throwing herself into many different projects. When she is not well enough to do one, she will find another. Music is her main love. She is a classically trained pianist, vocalist, songwriter, composer and ukulele player. She also enjoys writing, drawing, painting, crocheting, pixel bead art, photography, jewelry making, sewing, playing video games, robot building, and a number of other hobbies.
Love, compassion, friendship and understanding are most important to her. They are what gives meaning to her life.
Lisa was born with a congenital kidney disease called renal tubular acidosis. This combined with asthma, chronic infections, idiopathic angioedema and anaphylaxis have shaped her into a person who is thrilled to experience every bit of life and love, every sunset and every little joy that life has to offer.
She lives with her incredible partner, who is, and has been, her love, her best friend, and, at times, her caregiver.
She decided to start contributing her writing in the hopes she can help others know they aren’t alone, and help those who aren’t chronically ill better understand the people around them who are.